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(1) Background: Alzheimer's disease (AD) is a progressive neurodegenerative disorder marked by cognitive decline and functional impairment. The NeuronUP platform is a computer program whose main function is cognitive stimulation through three types of activities that change so that the user does not manage to learn it. This program provides opportunities to work on various domains, including activities of daily living (ADLs), social skills, and cognitive functions. The main objective of this randomized clinical trial was to assess the impact of integrating the NeuronUP platform with conventional occupational therapy to enhance or maintain cognitive, perceptual, and quality of life (QoL) abilities in people with AD compared to a control group. (2) Methods: A randomized, single-blind clinical trial was conducted. The sample was randomized using a software program, OxMar, which allowed the separation of the sample into a control group (CG) that received their conventional occupational therapy sessions and an experimental group (EG) that received therapy with NeuronUP, in addition to their conventional occupational therapy sessions. An eighteen-week intervention was conducted. (3) Results: The study included 20 participants, and significant differences were observed in most variables analyzed, indicating improvements after the intervention, particularly in measures of QoL and cognitive status. (4) Conclusions: Our findings demonstrate that an eighteen-week experimental protocol, incorporating the NeuronUP platform alongside conventional occupational therapy, led to improvements in cognitive status and QoL in older adults with AD. Thus, integrating the NeuronUP platform as a complementary tool to occupational therapy can be a valuable resource for enhancing the QoL of individuals with AD. However, due to the small sample size, further studies are needed to corroborate these findings. [ABSTRACT FROM AUTHOR]

Introduction: Locked‐in syndrome (LIS) is characterized by tetraplegia, anarthria, paralysis of cranial nerves, and facial musculature, with the preservation of consciousness and cognitive abilities, as well as vertical eye movements and eyelid movements, hearing, and breathing. Three types of LIS are distinguished: classic, incomplete, and total. The aim of the present study was to describe the life history of a person with LIS, as well as the wife's experience and perspective of this life history. Methods: A qualitative life history study was conducted with two participants: a 54‐year‐old man diagnosed with LIS and his 50‐year‐old wife. Data were collected through interviews and autobiographical documents submitted by the participants and analyzed following Braun and Clarke's method of inductive thematic analysis. Results: Five main themes were identified: (1) how to understand and overcome the new situation; (2) the process of care and rehabilitation; (3) communication; (4) writing as a way of helping oneself and others; and (5) personal autonomy and social participation. Conclusion: The participants valued the support of their friends and family in the acceptance stage of the new situation, giving special importance to the communication skills and medical attention received after diagnosis. [ABSTRACT FROM AUTHOR]

Background: Long COVID-19 syndrome remains a global public health problem, with more than 145 million people affected with multisystemic symptoms. Addressing the requirements of individuals impacted by a syndrome characterised by a complex and variable clinical presentation is of utmost importance. Identifying the variables that can exert influence and understanding their progression is essential for directing treatment strategies aimed at enhancing both independence and quality of life. Therefore, the aim of this study was to analyse the influence of sociodemographic and clinical variables on existence and their relationship with asthenia, anxiety symptoms and low mood. Methods: An analytical study secondary to an observational cross-sectional descriptive study. Results: Logistic regression showed significant univariate effects on asthenia [sex (p = 0.034); age (p = 0.042); Activities of Daily Living Questionnaire [ADQL (p = 0.002)] [physical functioning (p < 0.001) and general health (p = 0.014)] and multivariate [sex (p = 0.019), adult age (p = 0.01) and physical functioning (p = 0.04)]]; low mood [time of evolution (p = 0.028) and multivariate [time course (p = 0.007), ADLQ (p = 0.011), role physical (p = 0.013) and general health (p = 0.001)]] and anxiety [physical functioning (p = 0.046) and multivariate [physical functioning (p = 0.034), age (p = 0.011), time of evolution (p = 0.001) and ADQL (p = 0.011)]]. Conclusions: Increased age, gender and longer evolution time seem to favour the prevalence and occurrence of mental health symptoms; greater independence and good physical functioning are protective factors with respect to the occurrence of mental health-related symptoms in patients affected by post-COVID-19 condition. [ABSTRACT FROM AUTHOR]

Objective The purpose of this study was to describe the experiences of individuals with post–coronavirus 19 (COVID-19) condition symptoms who underwent a supervised telerehabilitation and home-based respiratory muscle training (TSHB-RMT) program. Methods A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling. The inclusion criteria consisted of: patients aged over 18 years who presented persistent COVID-19 symptoms of fatigue and dyspnea for at least 3 months after the COVID-19 diagnosis. In total, 28 patients were included. In-depth interviews and researcher field notes were used to collect the data. A thematic analysis was performed. Results Three themes reflect the patients' perspective on the TSHB-RMT before the program (reasons for participating), during the treatment program, and upon completion of the study. Among the reasons for participation, participants highlighted the absence of improvement and treatment, and feeling abandoned and forgotten by the health system. The treatment required discipline on behalf of the patients. Mondays and Tuesdays were the most difficult days for performing the therapy, and the physical therapist was perceived as a tool for adherence, change, and a source of validated information. The patients perceived positive effects quite soon; however, it was necessary to extend the follow-up after completing the program because they abandoned the program due to the lack of guidance for exercise supervision. Conclusion This study described relevant aspects that physical therapist professionals should consider when providing TSHB-RMT treatment. Impact TSHB-RMT requires discipline, perseverance, effort, and a commitment to the group. The physical therapist is perceived as the tool that facilitates adherence and participation. The effects are rapidly perceived, leading to improved self-confidence and autonomy; however, it is necessary to increase the follow-up time. [ABSTRACT FROM AUTHOR]

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Aim: To describe the experiences and unmet medical care needs of a group of parents of children with developmental and epileptic encephalopathies (DEEs) caused by the SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants. Method: A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling. The inclusion criteria consisted of parents of children with DEEs caused by the SCN1A, KCNQ2, CDKL5, PCDH19, or GNAO1 variants, aged between 4 and 10 years old. In total, 21 parents were included. Data were acquired via researcher field notes and in‐depth interviews. A thematic analysis was performed. Results: Three main themes were identified: (1) managing symptoms: epileptic seizures are experienced with great uncertainty and are accompanied by cognitive, behavioural, and motor symptoms; (2) accepting treatment: the ideal medication regimen is a challenge and the decision to withdraw or start a new therapy falls on the parents; and (3) therapeutic relationship and medical care: behaviours related to the health professional can hinder the therapeutic relationship with the parents. Parents are apprehensive about going to the emergency department. Interpretation: Professionals in emergency departments should acquire better knowledge of DEEs, welcome parents, and improve treatment for the children. The results of this study can serve as a starting point for a roadmap of relevant caregiver‐reported outcomes in DEEs, to be implemented with new clinical trials and aetiology‐targeted therapies. What this paper adds: Epileptic seizures are the symptom that is most experienced and feared by parents.The medication regime has no defined protocol and the decision to withdraw a medication is frequently left to parents. [ABSTRACT FROM AUTHOR]

Resumen: Objetivo: El Síndrome de Phelan‐McDermid (SPMD) es una enfermedad rara, infradiagnosticada y sin cura. El propósito de este estudio fue explorar la experiencia de los progenitores con niños diagnosticados con el Síndrome de Phelan‐McDermid, en relación con el proceso de diagnóstico, el tratamiento y la atención médica. Método Se realizó un estudio cualitativo descriptivo. Los participantes fueron reclutados mediante un muestreo intencional no probabilístico. En total, se incluyeron 32 progenitores con hijos con SPMD. Se utilizaron entrevistas en profundidad y notas de campo de los investigadores. Se realizó un análisis temático inductivo. Resultados Se identificaron cinco temas: "El proceso diagnóstico", se describe el proceso diagnóstico y la forma de comunicarlo a los progenitores; "El tratamiento y sus expectativas" describe las expectativas y esperanzas construidas sobre un futuro tratamiento; "Planificación familiar", describe como los progenitores se enfrentan al consejo genético, para la planificación de tener más hijos tras el diagnóstico de SPMD; "El mundo de la discapacidad", describe la entrada de los progenitores en el entorno de la dependencia y discapacidad tras el diagnóstico; "La economía familiar", muestra las dificultades económicas debido al elevado coste de las terapias y los productos del cuidado diario. Interpretación Nuestros resultados proporcionan una visión de cómo el diagnóstico y sus consecuencias son experimentados por los progenitores con niños con SPMD. Estos resultados pueden ser utilizados por los profesionales de la salud para ayudar y apoyar a los progenitores. [ABSTRACT FROM AUTHOR]

Aim: To explore the experience of parents of children diagnosed with Phelan–McDermid syndrome (PMS) with regard to the diagnostic process, treatment, and medical care. Method: A qualitative descriptive study was conducted. Participants were recruited using non‐probabilistic purposeful sampling. In total, 32 parents with children with PMS were included. In‐depth interviews and researcher field notes were used. An inductive thematic analysis was performed. Results: Five themes were identified: (1) the 'diagnostic process' describes the diagnostic process and how it is communicated to the parents; (2) 'treatment and expectations' describes the expectations and hopes placed on future treatment; (3) 'family planning' describes how parents deal with genetic counselling when planning to have more children after a diagnosis of PMS; (4) 'the world of disability' describes the entry of parents into an environment of dependency and disability after the diagnosis; (5) 'family's financial situation' highlights the financial difficulties due to the high cost of therapies and daily care products. Interpretation: Our results provide insight on how a diagnosis of PMS and its consequences are experienced by parents of children with PMS. These results can be used by health professionals to help and support parents. [ABSTRACT FROM AUTHOR]

Aim: To describe the experience of relatives of residents with dementia residing in locked‐down nursing homes during the first outbreak of the COVID‐19 pandemic, concerning their relationships with nurses and the nursing care applied. Methods: A qualitative descriptive study was carried out and purposive sampling was applied. Participants were first‐ and second‐degree relatives of residents with dementia, who lived permanently in a nursing home and who were admitted prior to the COVID‐19 pandemic. Sixteen participants, of which 10 were women (mean age 57.1 years), participated in the study. Data were collected through in‐depth interviews and reflective notes, using a digital platform. An inductive thematic analysis was carried out. This study was approved by the University Research Ethics Committee and followed the COREQ guidelines. The Guba and Lincoln criteria (credibility, transferability, dependability, and confirmability) were applied for quality control. Results: Families' relationships with nurses before the first wave relied on closeness and involvement in care. Families had difficulty maintaining a close relationship with nurses due to turnover and lack of time. The nursing care applied in the first wave resulted in limited family access to the nursing home, limited contact time with residents, and limited close physical contact. Conclusions: The first outbreak has affected the relationships among relatives and nurses in nursing homes. Changes should be made in the organization of care within nursing homes in order to adapt to restrictions due to the pandemic. [ABSTRACT FROM AUTHOR]

(1) Background: Parents of children with rare diseases experience great uncertainty and employ different strategies to care for their children and cope with the disease. The purpose of the present study was to describe the perspective of parents with children with Phelan McDermid Syndrome (PMS). (2) Methods: A non-probabilistic purposeful sampling was used to perform this qualitative descriptive study. Thirty-two parents with children with PMS were interviewed. In-depth interviews and research field notes were analyzed using an inductive thematic analysis. (3) Results: Four themes emerged from the data. "Understanding and accepting the disease" described how parents experienced their child's diagnosis and the lack of information. The second theme, called "Living day by day", highlighted the daily difficulties faced when caring for a child with PMS. The third theme, "Expectations versus reality", was based on the parents' expectations of parenthood and the reality they face. Expectations for the future are also included. Finally, "Pain and happiness" describes how parents alternate feelings of distress and suffering but also joy with what they learn from these experiences. (4) Conclusions: Health professionals can use these results to support parents. [ABSTRACT FROM AUTHOR]

Importance: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that produces both motor and cognitive dysfunctions. Impairments in limb function as a result of MS cause a decline in the performance of activities of daily living (ADLs). Objective: To determine whether the use of mental practice (MP) or MP combined with training in motor manipulation skills (skills training) would improve gross and fine motor skills and treatment satisfaction among people with MS. Design: Pilot study with a duration of 3 mo plus 3-mo follow-up. Setting: Two MS associations. Participants: Thirty-five patients diagnosed with MS of the relapsing–remitting and progressive secondary subtypes, ages 25 to 60 yr. Intervention: The participants were allocated to one of three groups according to their order of inclusion in the study: (1) MP, (2) MP + skills training, or (3) control group. The treatment protocol had a 6-wk duration and a total of 12 sessions. Outcomes and Measures: Blinded evaluators performed three assessments for each patient (pretreatment, posttreatment, and 3-mo follow-up) using the Nine-Hole Peg Test, Box and Block Test, ABILHAND, and Canadian Occupational Performance Measure (COPM). Results: We found no evidence of benefits in self-perceived performance of ADLs with respect to gross and fine motor skills; however, there was an improvement in perceived satisfaction and in the performance of activities, independent of the treatment received. Conclusions and Relevance: Perceived ADL performance and satisfaction with performance increases among people with MS when they receive MP, MP + skills training, and conventional rehabilitation treatment. What This Article Adds: Mental practice combined with conventional treatment could contribute to patients perceiving improved performance of ADLs. Self-reported outcome measures, such as the COPM, could provide highly valuable information about occupation performance that may not match the objective evidence. Perceived ADL performance and satisfaction with performance increased among people with MS when receiving mental practice (MP), MP + skills training, and conventional rehabilitation treatment. [ABSTRACT FROM AUTHOR]

To carry out a systematic review about the information about the application of of virtual reality and videogames in cardiac rehabilitation. A systematic review was conducted. Jadad scale was applied to evaluate the methodological quality of the articles included and the degree of evidence and the level of recommendation were determined through the Oxford Center for Evidence-Based Medicine. PRISMA guidelines statement for systematic reviews were followed. The total number of articles included in the present review was 10, with heterogeneity in the study populations, cardiac rehabilitation phases, technology used and protocols. Most of the studies showed an increase in heart rate, less pain, a greater ability to walk, higher energy levels, an increase in physical activity and improvements of motivation and adherence. The methodological quality of the studies was between acceptable and poor. The use of virtual reality and videogames could be considered as complementary tools of physical training in patients with cardiovascular diseases in the different phases of cardiac rehabilitation. However, it is also necessary to carry out studies with adequate methodological quality to determine the ideal technological systems, target populations and clearly protocols to study their effects in the short, medium and long-term assessments. The use of virtual reality and videogames could be considered as complementary tools for physical training in patients with cardiovascular diseases. Interactive virtual reality using exergames may promote heart rate, fatigue perception, physical activity and reduce pain in patients with cardiovascular diseases. Virtual reality and videogames enhance motivation and adherence in cardiac rehabilitation programs. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to describe the experiences of individuals with post-coronavirus 19 (COVID-19) condition symptoms who underwent a supervised telerehabilitation and home-based respiratory muscle training (TSHB-RMT) program., Methods: A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling. The inclusion criteria consisted of: patients aged over 18 years who presented persistent COVID-19 symptoms of fatigue and dyspnea for at least 3 months after the COVID-19 diagnosis. In total, 28 patients were included. In-depth interviews and researcher field notes were used to collect the data. A thematic analysis was performed., Results: Three themes reflect the patients' perspective on the TSHB-RMT before the program (reasons for participating), during the treatment program, and upon completion of the study. Among the reasons for participation, participants highlighted the absence of improvement and treatment, and feeling abandoned and forgotten by the health system. The treatment required discipline on behalf of the patients. Mondays and Tuesdays were the most difficult days for performing the therapy, and the physical therapist was perceived as a tool for adherence, change, and a source of validated information. The patients perceived positive effects quite soon; however, it was necessary to extend the follow-up after completing the program because they abandoned the program due to the lack of guidance for exercise supervision., Conclusion: This study described relevant aspects that physical therapist professionals should consider when providing TSHB-RMT treatment., Impact: TSHB-RMT requires discipline, perseverance, effort, and a commitment to the group. The physical therapist is perceived as the tool that facilitates adherence and participation. The effects are rapidly perceived, leading to improved self-confidence and autonomy; however, it is necessary to increase the follow-up time., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Physical Therapy Association. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)